Tuesday, April 24, 2012

playground work

Some of you might remember I mentioned that Maya is a bit scared when it comes to playing on the jungle gym.  These are thing that many of us take for granted.  Sometimes we might rely on one sense over another to guide us.  In this case we are speculating that Maya relies on her vision more than her other senses and so when she is looking down at the platform, the holes which allow her to see down to the ground, confuse her.  After looking down at the platform myself, I could see what she is experiencing.  It is scary.

So Maya's physical therapist and I thought we would try and go to the playground together.  It's really helped especially to get another perspective on how to help her get through this.

At first Maya was very resistant but just by using beads to play with on the platform, while sitting, has really helped.  Rolling a ball or throwing a ball is another way that keeps Maya's mind off of being on the platform.  Each time it seems better, but always at first she is afraid.  By the end of the session she is confident.  Last time she was so confident that she crossed a wobbly bridge.  Then she stood up on the platform all on her own without a hand to hold.

These are small triumphs for our daily lives.  They remind me that she is growing right in front of my eyes.  It makes me fall deeper in love with this little girl of mine.

1st time ever sitting on the platform.  She loved the beads.


After about 40 mins, she stood up on her own.

Exploring the step.

Getting adventurous on the wobbly bridge.



Monday, April 16, 2012

horseys and birthday parties

Around this time of year there seem to be many birthday parties that we attend.  Almost every weekend there is one and sometimes two. Maya has a very busy social calendar.  Sort of like her mama I guess.

Most of the time Maya does pretty well at birthday parties.  Depending on what they are doing.  It is a lot of work because sometimes she just wants to do, what she wants to do and not what everyone else is doing.  She's gotten better over the years in interacting with the other kids though. 

There is one thing that always seems to upset her, even in her own birthday party.  Ironically it's when they sing Happy Birthday and at the end everyone claps and yells hooray or something similar.  It really upsets her and sometimes I just take her away even before they sing to avoid the discomfort.  I'm thinking this is only a typical reaction for a person with sensory issues.  Slowly but surely she is getting better.  

There are a couple of birthday parties that we have gone to this last month that really stand out as successful events.   One was a party at a gymnastics center.  I've been to this gym with Maya before when she was young and she really wasn't that interested in it.  Mostly because she was just starting to walk, I think.  This time I was utterly impressed with how well Maya did.  First off I could really see how preschool has been helping her with following directions.  When the kids lined up and were waiting to take turns for each station (the trampoline, the balance beam and high bars), she actually stood or sat in line with the other kids. 

When it came to an obstacle course of tunnels and balance beams, I was so happy that Maya seemed interested in it and followed the others.  I think that her sensory OT has really been helping her with motor planning.  She loved the trampoline run also, but the cushion pit freaked her out.  It was a good party and I'm even thinking it would be good to start taking some gymnastic classes over the summer.  

This weekend we went to a birthday party at a horse stable.  I was a bit worried that Maya would not like it but I really wanted her to have the experience.  She LOVED it!  Honestly I don't know why I thought it would be any different.  She loved being on the horse.  Of course I was concerned that she would want to get down or fall off, but she didn't move at all when she was on the horse.  She had a smile on her face the whole time.  All the trainers were so sweet to Maya.  They could see the happiness she had from riding.  When it came time to get off, Maya kept signing "more".  It was so cute.

Later on after cake and snacks, we all went over to feed the horses apples and carrots.  Many of the kids were a little squeamish about it, but Maya picked up a carrot and raised her hand to feed the horse without a fear in the world.  She wanted to keep doing it over and over again.  Not until the last carrot and apple was gone did she let up. It was so amazing to see how she reacted to the horses.  She was so calm and happy.  I can see why horse therapy is so good for our special ones.

Here are some photos of the parties and all the fun we've had in the last couple of months.

content and happy.

checking out all the horses.

feeding her new friend.

A natural.

patiently waiting in line.

balance beam with Dada.

parachute play with her friends.





Tuesday, February 28, 2012

A new year, in February.

Happy New Year!

I know it's rather late to say such things, but I did start this entry back in January.  And now it's the end of February and I still haven't found the time to finish this thing.  In some ways maybe I needed a little break from reading and writing blogs but I've never stopped thinking about what I'd say. Although I have wondered if writing my thoughts down amounts to much.  It's made me question why I do this.  I know I'm not a great writer, I'm not poetic like other bloggers I read, hell sometimes I just don't even know if anyone is reading this thing.  When I really think about why I write here, I think that I just don't want to forget.  I want to always remember the things that Maya does, and to share this with her family and friends. 


I often describe myself as being a hands on mother.  I say this because I can't sit back at the playground and watch my kid play on the jungle gym with the other kids.  I have to be right there with her because she has a hard time dealing with the height of the platform and her sensory issues kick in. At that point she usually holds on to me for dear life.  She doesn't always know what to do with the sand toys I bring with us.  So I remind her how to play. And although she loves to watch the other children playing at the park, she doesn't know how best to interact with them. But these little moments remind me of the upside to being a stay at home mom.  See needs me.  More than that, I am grateful that I can be there as her support and comfort.


Otherwise, Miss Maya is pretty independent.  I say independent but really I mean she doesn't do anything she doesn't want to do until she's ready.  Including go to the potty when mama wants her to go.  Hold hands on the side walk or even walk on the side walk for that matter, (she rather be carried).  She has always done things in her own time.  This of course has been a learning tool for me.  Let's just say everyday I learn more and more about patience and acceptance.


With Maya at preschool and 9 therapies a week, I don't have to tell you it's been really busy here.  Results from a new speech evaluation shed some light on Maya's speech delay.  They said Maya leans towards having Apraxia.  So we added three more sessions of speech therapy per week.  The center we go to has specific techniques that they have developed and so far we are seeing very good progress. 

One day at therapy she was trying to mimic what the speech therapist was telling me.  It was so cool to see this happen.  To recognize that she IS trying makes all the difference in the world.  She is mimicking what barney is singing, what the fresh beat band is singing.  It's so wonderful.  On top of this, for the last few months she has started to say "kay" as her yes. She is learning to communicate not just though ASL but through her voice.  It's slow but everyone who knows her, sees the difference.

I know that Maya is smart in so many ways, I know she understand us clearly.  I know little about Apraxia, but what I have been told is that the connection between the brain and action are lost somewhere along the way.  She knows what she wants to say I'm sure, but she just can't make her vocal cords and mouth do what it needs to do.  The fact that she is not talking sometimes makes me sad.  But I have learned to read Maya's body gestures, facial expressions, ASL signs and even her babbling sounds.



To hear her say words, like kay, go, bye, and of late we are working on Barney, more, and potty.  Well you can imagine how my heart races.  I'm also learning to accept that Maya is where she is meant to be.  It is a challenge but she will learn to communicate with others, whether it is through ASL, a speech device or her own voice.  I do think that her personality is strong, she is a strong person and she will succeed in anything she wants to do.  One thing is certain, I don't take anything for granted with Maya.  Every little milestone she makes I take note and I hope to always share them here with you.

Friday, November 25, 2011

halloween...a long time coming.

Yes, it's taken me this long to get back blogging.  After doing the 31 for 21, I needed a break.  Also both Maya and I have been struggling with sickness.  Off and on we have been sick for over a month.  It sucks!  Snotty noses, sore throats, coughs, bronchitis....it hasn't been fun. I think we are both finally on the mend. 

Anyway I wanted to post photos from our Halloween.  Every year is an adventure when it comes to this holiday.  Now that I have a little more understanding about Maya's sensory needs, I can better deal with meltdowns.  But before the trick or treating started Maya's playmates from our mommies group decided that we would have a little get together.  I have to say that this was the highlight of the day for us.

This year I asked Maya's respite / habilitation provider to come along with us.  Honestly Maya just adores her.  Christina is an energetic college student who has years of experience working with children with special needs.  In short, I get the feeling that Maya and Christina are almost like sisters.  They just get along so well.  I am so grateful that she has come into our lives.

At the party, Maya had a great time playing in the backyard with the other kids.  There was even a pinata and pizza dinner. I was really impressed with Maya's participation in swinging at the pinata.  To top it off she even ate a whole pizza slice.  These are the moments that I just don't take for granted! 

When the sun started to set we all made our way to the neighborhood for trick or treating. On the way to the neighborhood, Christina showed Maya how to sign "trick or treat".  Within a few minutes we hit the first house.  Maya signed "trick or treat" and with that, slowly I think she started to understand what she was supposed to do.  She carried her pumpkin bucket a few times, but usually dropped it after she got the candy. It was cute though and I was really pleased that she was getting the concept.

Unfortunately Maya had a bad fall at one of the entry ways of a home and after that she was pretty much done.  But all in all I think it was a great Halloween night.  Every year it gets better.  I think having the get together before the trick or treating was a great idea.  I could see that as being a new tradition for sure!

Walking to the party with Christina.

Making her way to the backyard.

Getting coaching on how to hit a ball.


Playing soccer with a friend.

Getting ready to hit the pinata.


Hitting the pinata.

Picking up the loot.

The first house.


A happy girl.

After the fall, Maya got a ride.
On our way home.

Monday, October 31, 2011

31 for 21, Day 31: Happy Halloween.

Happy Halloween!  Happy last day of Down Syndrome Awareness month!  Lots still to say and hope to keep writing event though 31 for 21 is over.

We had a busy day today and a pretty good Halloween.  Maya is crashed and I'm ready to sleep also.  More about that tomorrow...

Sunday, October 30, 2011

31 for 21, Day 30: Quality time

It was so nice to have a bit of quality time with the family today. We had some time today between doing our Sunday errands to hang out in the backyard.  We took out the bouncy house that a friend lent us.  It's just the right size for Maya to bounce in.  Dada couldn't help but also get inside.  These are the moments I cherish most.  Just hanging out and doing silly things together like this is the best thing about having a family. 

Maya cleaning Dada's face.

I think Maya thought the cloth was a napkin.

Trying to jump. She's almost there.

Trying to walk in the bouncy.

A very happy girl.